Newbie needing advice!

[Dempstaa]

Hi all. I'm in a bit of a pickle, since the age of 4 I've had facial&vocal tics. The facial ones are; squinting, shaking my head, ruffling my nose and eyebrows. The vocal are clearing my throat and humming. I am now 18 and it hasn't got any better. There are times when all of my tics aren't that bad but then they can go the opposite way and be terrible. I recently went to the doctor and he has referred me to CBT (cognitive behavioural therapy) my worry is that it won't work as I've had them so long.. Could anybody give any advice? I would be so grateful!

[my2sons]

Have you tried diet intervention?

[Dempstaa]

I haven't because I haven't been diagnosed with Tourette's. My mum suspects its Tourette's this is why I posted in here because I was just wondering if anyone could shed any light.. But no I haven't tried any kinds of diet

[my2sons]

A lot of parents with kids with tics see a great deal of improvement in tics with diet modification. I did with my own son. Removed gluten and casein from his diet as well as artificial dyes, flavors, and preservatives and his tics have decreased every since. He went from ticcing all day, every day to about a few times a day and it has only been three months on the diet. I am hopeful we will see complete remission of symptoms in a few months. If not though i am happy where they are now.

[Dempstaa]

Aww that sounds great! I hope he gets to where you want him to be. Sounds brilliant. It's weird because yesterday and the day before my tics were so bad, bad enough that they ended up giving me a headache where I was constantly doing it. But today they haven't been so bad. I'm just confused, does it sound like Tourettes?

[Chemar]

Hi

whenever there are vocal and motor tics for more than a year...it may be Tourette Syndrome, but most often TS is genetically inherited .............so do you have any family members who have tics or are diagnosed with TS?

 

Often, people who have tics are misdiagnosed with TS when in fact their tics are caused by something else....as mentioned above, dietary reactions can be a major tic trigger, as can environmental allergies, toxins (like pesticides, mould etc) and many more.

 

There are also people misdiagnosed with TS when they in fact have infection triggered tics, which is known as PANS or in the case of strep induced symptoms, PANDAS. We have a separate forum for that here.

 

I would suggest you read our helpful threads pinned to the top of this forum, which I also have linked in my posting signature below.

[Dempstaa]

Hello,

I spoke to my mum and she said there are no family members who have had it. Just me, if it was just a case of having it for 6-8 months I'd look the other way, but the fact it's been going on 14years has thrown me.

Ill definitely check that forum out. It's weird I don't feel out of place here haha. It's hard to talk to someone else about it😳.....

[msimon3]

You may want to consider the possibility of tics being a symptom of an active neurological infection or an effect of an autoimmune process:

http://www.ncbi.nlm.nih.gov/pubmed/23230453

 

Many diseases could either infect your nervous tissue directly, like Lyme disease, or cause autoimmune reactions to nervous tissue due to cross-reactivity of the antigen, like M. Pneumoniae / PANDAS / PANS.

 

I would stay away from CBT and neuroleptic drugs, and instead use the tics as a diagnostic measure of your health. Seek out the counsel of a good doctor who:

- has a background in infectious disease and immunology.

- is willing to provide you a full clinical assessment, discussing all health symptoms you had since age four.

- is willing to order blood tests to assess current state of your immune system, current state of common autoimmune antibodies.

- is willing to challenge the immunity hypothesis with a "steroid burst" for 21-30 days and see if your tics subside. If your tics go away when on steroids, then it is reasonable to believe that the tics are caused directly by an immune process, or indirectly by inflammation caused by an immune process. If your tics are caused by immune process, you will need to find and work with doctors who can help you explore the possibility of current infections versus past infections. Immerse yourself in resources devoted to PANDAS / PANS and Lyme disease, and recognize that many doctors may be uninformed and not well aligned with current research.

 

Change in diet has not been helpful in our situation, however you can become familiar with the idea that chronic inflammation could lead to "leaky gut" or intestinal permeability which could lead to a variety of neuro-psychiatric symptoms. In other words, if you have dietary sensitivity you should manage it but also consider to role of inflammation as a cause to that sensitivity. http://www.ncbi.nlm.nih.gov/pubmed/22906518

 

Hope this helps. You have a wide variety of options to consider, but you are on the hunt for the cause which is great. Stay on the hunt until you find it!

Edited July 24, 2013 by msimon3

[Chemar]

I have to post a very urgent caution here!!

Dempstaa, IF you do in fact have Tourette Syndrome then do NOT have a "steroid burst"!! It can stimulate dopamine which in people with TS is a major tic trigger, and sometimes the results can be very long lasting with tics remaining highly elevated!

 

 

I know that people who have PANDAS can benefit from steroids but there are a number of posts on our PANS/LYME forum warning that not all infections benefit from it, and in some cases it can also be detrimental.

 

So please be very careful in just following what some may recommend when you are still in this stage of uncertainty as to what may be the root cause of your tics. I realize the advice is well intended but people who do not know about TS should be careful in making such broad statements that can actually be detrimental to someone who has Tourette Syndrome!

 

I absolutely agree that finding a doctor who is willing to investigate fully and *then* recommend appropriate treatment is the best and also that neuroleptics are often not worth it as they have awful side effects.

 

CBT however is a highly respected form of therapy that some are using for tics, though it is more often used for OCD etc

[msimon3]

I don't disagree with Chemar on the risks of a steroid burst. As with any treatment, there is risk involved that you must consider with your doctor. A steroid burst is immunosuppressive and should be used with antibiotic treatment to avoid allowing infection to spread.

 

Also consider that TS is a clinical diagnosis whose definition has changed over time, which makes it difficult to be certain what is 'true' Tourette's and what is not. There is no test for TS. What causes a tic is also not definitive: is it brain histamine? it is elevated dopamine? is it autoimmunity? it is microglial activation? It could be many things, not merely elevated dopamine, and the challenge is to identify likely causes and eliminate unlikely causes. Unfortunately, my personal belief is that immunological processes are frequently overlooked by neurologists who focus on treating the symptom rather than looking for the cause.

 

In our case, we had rapid onset tics and OCD following a fever at age 5. We saw many doctors who said it was Transient Tic Disorder, Tourette's, stress, anxiety, PDD NOS, etc. and none of these doctors considered an immunological process despite the clinical indications. All of them offered drugs, CBT, yoga, diet modifications and "wait and see" type of recommendations that seemed reasonable but ultimately led us in wrong directions and wasted time. Only when we started working with doctors with backgrounds in infectious disease did we make progress. Tics were reduced by 85% during a 21-day steroid burst, only to return once the burst was over. Ultimately, after even more doctors, we found the cause was Lyme neuroborreliosis.

 

But that is just our case. Your case is different, and the causes of tics are widely varied. I offer up the immunological perspective only because I think it is underrepresented, and wish you the best of luck!